Esther12
Senior Member (Voting Rights)
https://web.archive.org/web/20140811161130/http://www.fine-trial.net/downloads/Patient PR Manual ver9 Apr05.pdf
I saw that this was off-line, but found an archived version so thought I'd post it here for anyone googling for it. It's a pretty annoying document, and those new to looking at CFS research might be interested to read through.
The FINE trial reported null results for its primary outcome, but the FINE researchers went on to produce guidance for RCGP training on ME/CFS despite this, largely just repeating their own failed approach, combined with that seen from CBT/GET in the PACE trial. Tuller writes about this training here: http://www.virology.ws/2019/01/28/t...roubling-claim-in-parliamentary-debate-on-me/
Tuller's first blog on FINE:
http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/
I think that FINE is the second largest trial on the Cochrane Exercise review, and Caroline Struther's complaint to Cochrane says this about it:
http://www.virology.ws/2019/02/20/t...-update-and-caroline-struthers-latest-letter/
I saw that this was off-line, but found an archived version so thought I'd post it here for anyone googling for it. It's a pretty annoying document, and those new to looking at CFS research might be interested to read through.
The FINE trial reported null results for its primary outcome, but the FINE researchers went on to produce guidance for RCGP training on ME/CFS despite this, largely just repeating their own failed approach, combined with that seen from CBT/GET in the PACE trial. Tuller writes about this training here: http://www.virology.ws/2019/01/28/t...roubling-claim-in-parliamentary-debate-on-me/
Tuller's first blog on FINE:
http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/
I think that FINE is the second largest trial on the Cochrane Exercise review, and Caroline Struther's complaint to Cochrane says this about it:
It seems that such problems did not just afflict PACE, the largest study included in the Larun review. For example, the second largest trial, FINE, made use of what was described as “Rousing Reassurance”. This involved telling patients things such as “every exercise is strengthening your body”, “there is no disease” and “from the moment you walk out of this room your recovery is beginning”.
As well as potentially biasing participants’ self-report outcomes, such reassurance also seems likely to affect how staff viewed participants. There are indications that this has happened, such as a paper from the FINE trial which quotes a supervisor saying: “There have been one or two times where I have been worried because they have got angry at the patients…that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over… there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know ,“The bastards don’t want to get better””
By promoting unduly positive views of the quality of research like PACE, and the benefits of exercise therapy for CFS patients, Cochrane risks playing a role in biasing the way society responds to an entire patient population.
http://www.virology.ws/2019/02/20/t...-update-and-caroline-struthers-latest-letter/
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